intractable migraine

[Rosebud66]

Sorry, harping on again!

is there any point? I sustained two head injuries 2.5 years ago, and am constantly struck down by intractable migraine, can’t sleep through them. I’m now at the start of my fourth week of migraine. The intensity shifts, but other than with Botox (didn’t work second time) and Ajovy (allergic reaction after 3 months when I sustained another brain injury) I have had no relief in the past 2.5 years.

Has anyone out there suffered from this? Does it get better? I’m feeling mine are now in the groove and won’t shift. I have tried suicide twice and am now looking at Euthanasia… any thoughts? Has anyone got better, really, is it worth plugging on?

[cat3]

Rosebud, I've copied a link from 'The Migraine Trust' which talks of new treatments for migraine which claim to be more effective and with fewer side effects.

Maybe ask your doctor or specialist about CGRP treatments... all details are on the Migraine Trust site below. Some are awaiting NICE / SMC approval but others are available now.

**************************

migrainetrust.org/live-with...

My best wishes, Cat x

[Rosebud66 in reply to cat3]

Hi, I’ve tried them all, and no relief.. Rimegepant, Ajovy injections, the newest one on the market, no relied. My MRI and Ct scan all good. Migraine trust can’t help but try available treatments… I honestly have tried them all and even cold therapy, acupuncture, chiropractor, healer…. herbal remedies. I just have had enough of the pain. It’s not fatuuige, which I wish I had instead of being in Ned all day wracked by migraine pain… but thank you x

[Rosebud66 in reply to Rosebud66]

Sorry, relief….instead

[Hidden in reply to Rosebud66]

Hi Rosebud, the back of my head got hit against the edge of the divers seat when I had my accident in 2017. One whole half of my skull felt like it was encased in concrete and the other side was only half encased. It hurt like hell all the time, physio did'nt work, in fact it made it worse. I had multiple other symptoms that included visual processing. I went private to see an alternative optometrist and was prescribed colored glasses. The weird thing was that after a few hours of wearing them I fell asleep and when I woke up half of the pain over my head was gone. for some reason after that meditative movement of my head and neck in exercise form cleared all the rest of the pain over a period of two years. It was as if the glasses had opened a door by releasing something that kept the cause of the pain locked in. Once the door opened everything else worked.

When everything that had happened to me and the process of recovery was reviewed years later it was found that in my medical records my head had been knocked out alignment and it was thought that some nerves had been impinged where my head joined my neck everything was locked up in tension. This was causing all the pain.

Do you feel like you have a rod shoved down through your skull into the back of your neck accompanied by the feeling that a skewer has been pushed through an eye straight into the back of your head. Also the jaw joint on one side of your mouth is locked up and really painful and there is a really sharp pain in the back of your neck on the same side where your skull meets your neck. These were the symptoms from the misaligned head. I don't know why but the glasses unlocked it all but it took lots of head and neck exercises (two years) to free up the rest.

Maybe your head is misaligned too, have you been assessed for that. I saw a private cranial osteopathist who assessed my body shape and alignment. She did a few things to try and help but she said she did not have the skills to fix the problem and said I should try and find someone else with specialist neuro skills. Luckilly after that I went to get my vision checked (again private) and got the glasses and never looked back. All the exercise that fixed my head I found on YouTube, I just tried a few and made a compilation of them in a routine and it all worked.

I'm not saying the glasses would work for you but there may be something that can help unlock the problem. I did not have any botox, pain killers or anything like that. The NHS were useless, that's why I went private and looked to alternatives on YouTube instead and they all worked.

Sorry it's all about me but I recognize some of your symptoms and thought my experience would help.

[Rosebud66 in reply to Hidden]

Hi pinkvision, funnily enough I have an appointment with a vision specialist which is absurdly expensive, £450…. I was wondering about cancelling after hearing the cost. I have a sharp pain like a hot rod against my nose into my eyes and my head feels like it’s exploding on both sides. I have seen a cranial osteopath but no joy. My MRI came back clear. What exercises did you use on YouTube? Thanks for taking the time…

[Hidden in reply to Rosebud66]

Cardiff university opticians do a range of eyesight and optometry tests for less than £450.

cardiff.ac.uk/optometrists

They teach optometry at the university and are recognized as one of the best in the world.

(I went to a private one in Wigan but she has retired, I paid £75 for three hours of tests)

But at the end of the day the money is irrelevant if it helps you.

Have you tried facial exercises, have a look at exercises for Bell's Palsy and other facial conditions.

I found trying all kinds of exercises out had a good effect, some worked and some did not. If no one knows what's happening to you then just experiment and see what happens. You have to give them at least a month of daily exercise. I found some made me worse to start with then they got better and made a difference.

Some of it is really painful but I realized that was part of it as the body adjusts.

Just search YouTube and try.

If your condition is making you suicidal and no one can help then try something different.

Wishing you well.

[Hidden in reply to Rosebud66]

As a matter of interest what did they scan during the MRi?

[Rosebud66 in reply to Hidden]

The back of my head and neck, found it clear

[Hidden in reply to Rosebud66]

Did the results say anything about intercranial nerves?

[Rosebud66 in reply to Hidden]

No, I was just told by my GP that it was clear, haven’t even seen the scan!

[cat3 in reply to Rosebud66]

Sorry you're plagued with pain Rosebud.

I used to have visits from my GP (in the days when GP's were 'hands-on' and made home visits) and she gave me anti-sickness injections so I could have a break and get some sleep.

Weirdly, after my brain haemorrhage the migraines stopped ; I've had only one in the past 11 years...

Pinkvision's info on head alignment exercises and/or specialist glasses could be worth considering ; he's a clever guy.

Also, have you tried speaking with the Headway team for professional advice and support ? (0808 800 2244 weekdays)

Thinking of you m'love... x

[Rosebud66 in reply to cat3]

Hi cat3, I haven’t tried Headway… I have a GP who is trying to break the cycle of migraine with various medications, first time ever! Thanks for your reply…

[cat3 in reply to Rosebud66]

Good luck ....truly ! 🤍x

[skydivesurvivor]

hi, had lots of headaches initially , took it as the brain rewiring! Think it lasted a few years. My personality developed & was able to shed the worst bits, hope I am now a more considerate character. Found I lost a lot though, have very few emotions these days . Spent 20 years looking after mum as dad eventually passed. Did her shopping on way to see her daily. Resented writing lists! I can remember things surely?! Only had maybe 5 things to get on way…..kept me fit having to go back to shop for correct stuff!!! She has now passed & nothing to do!! Feel cast aside by social services, offered counciling? Sat there talking crap, weather n shit!! This challenging but at least am still alive?!!

[Rosebud66 in reply to skydivesurvivor]

That’s heartening… I seem to get really bad viral migraines and neural fatigue… So it’s the sleep that makes it worse! If only the headaches could shift! Thanks!

[Braindeadhead]

Hi Rosebud66I had the most terrible migraines with my brain injury. I have an anoxic (starved of oxygen) injury from my heart stopping. Nothing even remotely touched the pain. I couldn't lift my head off my pillow, get out of bed - only to vomit with the pain. They would last for 3-4 days, go for a day and then return for another 3-4 days. No one told me I had a brain injury and I didn't know what was happening to me. I have always had migraines but not in the same league as these ones. 100mg codeine didn't touch them either. I ended up seeing a neurologist who offered Gadapentin but I refused it as it is known to mess up the heart defect I was born with. Although my heart has stopped loads of times throughout my life (I have an internal defibrillator that usually re-starts my heart) my heart struggling to be defibrillated the last time it stopped is what gave me my brain injury. I didn't want to take medication that would put me back into that position again. Quite by chance I started taking magnesium oxide for a separate reason and after 6 months I noticed a huge reduction in my migraines intensity and frequency. I have since learnt that migraine oxide can help with migraines. Perhaps that would be worth a try as well as the suggestion from PinkVision. I put my migraines down to nerve damage, which is painful, and nerve repair. Magnesium apparently can also help with nerves. However, a word of caution, don't start taking it until you've spoken to your Dr or a pharmacist to check it is OK with any medications you are taking. All the best, and I feel for you

[Rosebud66 in reply to Braindeadhead]

Yes that sounds familiar.. I am taking Magnesium but not Magnesium oxide, so will chat to the doctor about it…thank you x

[Braindeadhead in reply to Rosebud66]

It does have to be magnesium oxide

[skydivesurvivor]

actually slept 8 hours last night, ok was in bed that long!! Took 24 years to achieve!!

[Rosebud66 in reply to skydivesurvivor]

Well done!

[Teazymaid]

hi rosebud I’m sorry to hear life has been so difficult . What a pain in the ass actually living can be . I have been where you are with not wanting to be here anymore but mine wasn’t from the TBI it was before . Many years before as I’m the same age as you I think 57 🫤where did the years disappear 🫠 .. from a very different situation I as in one hell of a place with depression and also didn’t want to be here but the best thing I ever did was seek counselling … without this I know I wouldn’t be here or if I still was here my life would have been hell as I had no way of dealing with what had happened .. the same situation has arises again since my accident and again I have seek counselling .. nothing changes but you can learn to deal with horrible things in a more positive way .. I’m 3 years post accident and am still trying to deal with a whole new body and brain and waiting for the next MRI next week .. I can’t say about your migraines but don’t give up fighting with Drs to get more help , advice, meds .. but from the way you feel mentally please get counselling and don’t give up if the first person you see dosnt help ( they are all very different, so not everyone is right for you ) .. plus pain management does work so get Drs to refer you .. nothing is a miracle cure and takes time and hard work to achieve a better place but it really is so nice to achieve anything and feeling better is one hell of a miracle when your feeling the way you have said you are feeling .. start fighting for you as you are your own best friend .. Sue x

[Rosebud66 in reply to Teazymaid]

Thanks… I’m definitely low and anxious and have had some pain management but it’s so difficult with intractable migraine. Depression also hits hard so I get where you are. Take care x

[Teazymaid in reply to Rosebud66]

it really is debilitating .. not sure is you have tried sport massage in your neck back and shoulders as this has helped my migraines and acupuncture I’ve also had … Sue x

[Repairshop]

I was given this article by my physio. Just in case there is anything new in here to be useful.

Article about vitamin supplements for migraines

[Rosebud66 in reply to Repairshop]

Yes I’m on all of these..